DRW and NDRN to work on Ashley Report

Photograph of David Carlson

In early 2007, the world learned about Ashley X, a young girl who was kept small and prevented from developing sexually through the use of high doses of hormones, and removal of her breast buds and uterus. Ashley’s parents and doctors publicized this set of procedures which became known as the Ashley Treatment. Ashley’s parents created a website which advocated for the use of the Ashley Treatment on all children with similar disabilities whom they referred to as “Pillow Angels.”

The Protection and Advocacy system for Washington State, Disability Rights Washington, conducted an investigation into the use of these procedures and released a report detailing the way in which the application of these procedures violated Ashley X’s rights. Disability Rights Washington also reached an agreement with the hospital that performed this set of procedures to improve understanding of disability issues and increase procedural safeguards to ensure adequate due process if similar procedures are contemplated in the future. In less than a year, the timeframes on those agreements will run out.

In the time since the Ashley treatment was made public, the conversation about the appropriateness of these procedures has continued. Despite the attention given to the issue by individuals with disabilities, philosophers, doctors, lawyers, parents of children with disabilities, and the general public the disagreement over the use of the Ashley Treatment persists. In a relatively recent bioethics journal article, an interdisciplinary workgroup published the product of their deliberation on the growth limiting portion of the Ashley Treatment. The authors of that article propose a compromise that “growth attenuation can be an ethically acceptable decision because the benefits and risks are similar to those associated with other decisions that parents make for their profoundly disabled children and about which reasonable people disagree” but acknowledge that “[t]he compromise left some of [them] dissatisfied, and even distressed, because it was a less-than-desirable position given our convictions.”

In light of the continued lack of consensus on the appropriateness of the Ashley Treatment, further sharing of information and additional scholarship is called for. The National Disability Rights Network and Disability Rights Washington are in the process of reviewing the information that has published in various medical, legal, and popular journals since the world learned of the Ashley Treatment. Over the next several months they will also be connecting with individuals with disabilities and various legal and medical experts to add to the current scholarship in the area by further examining the way in which the Ashley Treatment impacts the civil and human rights of children with disabilities.

4 responses to “DRW and NDRN to work on Ashley Report

  1. Do you have access to the bioethics article referenced? The link states a subscription needs to be purchased to read the article. I would be very interested in reading it but cannot afford a subscription.

    1. Thank you for your interest in the recent post about the Ashley Treatment. I am sure a lot of people would like to read the bioethics work groups report. Unfortunately, I cannot post or share a copy of the work group paper due to copyright restrictions. Perhaps if you contact the Hastings Center they would be able to share a free copy with you. Alternatively, academic institutions often subscribe to this Hastings Center Report or have electronic access to it, and state universities usually allow the public to access their library materials at no charge. I hope this helps.

    2. @ Cheryl you may also try contacting the authors for a copy. This has worked well for me in the past, every academic author I have talked to want people to read there work and cite it and are happy to share a copy. Sad to see such important research not publicly accessible.

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